"All United for MG" coalition launches a petition to advocate change in Myasthenia Gravis

gMG is recognized as a rare chronic autoimmune disease that imposes substantial challenges on the majority of individuals affected. It causes complex and chronic physical symptoms that weaken the body's muscles and can be potentially life-threatening. Affecting facial expressions, vision, speech, chewing, swallowing, and breathing, it makes daily movements exhausting and challenging. As a rare disease, it remains difficult and time-consuming to diagnose.  gMG is recognized as a rare chronic...

gMG is recognized as a rare chronic autoimmune disease that imposes substantial challenges on the majority of individuals affected. It causes complex and chronic physical symptoms that weaken the body's muscles and can be potentially life-threatening. Affecting facial expressions, vision, speech, chewing, swallowing, and breathing, it makes daily movements exhausting and challenging. As a rare disease, it remains difficult and time-consuming to diagnose. 

"Taking action at European Union level is extremely important to raise awareness and increase interconnectivity among all Member States. This enables rare disease patients and healthcare professionals from different countries to exchange data, ensuring better understanding for the disease and better social support. It is thus crucial to collectively support All United for MG initiative to underline the significant impact of MG on patients' daily lives, as well as to their loved ones. I would also like to encourage all EU citizens to sign the petition, stressing the importance of raising awareness of MG and defending the rights of those affected, and bringing positive change to the rare disease environment in Europe" said Stelios Kympouropoulos, Member of the European Parliament.

"gMG is a debilitating neuromuscular disease with complex physical symptoms that, for the most severely affected patients, even necessitate the assistance of a caregiver," added Prof. dr. Jan De Bleecker, Ghent University Hospital and Ghent University. "There remain unmet needs in rare disease, and as healthcare professionals, it is crucial for us to ensure that the broader healthcare community comprehends the intricacies of the disease for improved management."

"The burden of the gMG is not universally well-understood or recognised across Europe. Raising awareness and elevating the patient voice can make a meaningful difference in driving change. The aim of the petition is thus to mobilise each citizen to lend their support to patients and the broader rare disease community. By uniting individuals in this collective effort, we can foster a greater understanding, stand up for improved resources, and ultimately enhance the overall quality of life for those affected" said Lutgarde Allard, Board Member at EUMGA.

"Rare diseases often struggle for visibility in political discourse, making the All United for MG petition all the more important. This Call to Action urges citizens to join hands in encouraging positive change. In the current political environment, this petition serves as a powerful tool to highlight the necessity of prioritizing Myasthenia Gravis, neuromuscular disorders and more broadly rare diseases in the policy agenda" added Jean-Philippe Plançon, President of EPODIN.

If you want to express your support by adding your signature, you can access the online petition via this link: https://www.change.org/AllUnitedforMG.

About Generalized Myasthenia Gravis

Generalized myasthenia gravis (gMG) is a rare and chronic autoimmune disease where IgG autoantibodies disrupt communication between nerves and muscles, causing debilitating and potentially life-threatening muscle weakness. Approximately 85% of people with MG progress to gMG within 24 months, where muscles throughout the body may be affected. Patients with confirmed AChR antibodies account for approximately 85% of the total gMG population.

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